In July 2009, our beautiful son Adam was diagnosed with high-risk neuroblastoma, an aggressive children's cancer. Despite four years of treatment in the UK, Germany, and America, Adam sadly passed away on 11th July 2013 at home with his family. Visit Adam's Appeal at http://adamsappeal.org.

Friday, 18 February 2011

Controversial? Moi?

I'm not somebody that likes to be controversial, nor do I seek to be confrontational. Fact is I hate arguments; still have them of course, we all do. But I don't like them. I am what I am, I do what I do; other people are what they are and they do what they do. It's in this context that I need to choose my words very carefully today, as I really don't wish to offend people who are only doing their jobs. However, it's been an interesting couple of days.

Adam's lack of food intake, stemming from first sickness and then mucositis, had been a cause for concern for a while. More so it has to be said with the doctors, nurses and dietician at the hospital than with Alison and myself. We knew that in all probability he'd be off his food for a period of time, but it didn't make us too uncomfortable as we were very happy with his weight going into high-dose. My view was that as long as he didn't show clear signs of malnutrition, have drastic weight-loss, or become weak and lethargic, we would manage the situation in hospital as best we could then build Adam back up once he was home and had recovered his appetite.

An alternative view, and one that seemingly prevails at our hospital, is that the primary objective should be to minimise weight loss during treatment using any and all means possible. We have been quite meticulous in managing Adam's diet over the past six to nine months. Not once during this time has anybody associated with the medical establishment taken one iota of interest in what Adam eats, or indeed his nutritional status. The weight he has gained - from 21 kilos after surgery in October to 25 kilos as he entered high-dose in February - is all down to our own efforts, under the guidance of our nutritional therapist. And none of that weight gain has been through eating junk. None of it.

However all of a sudden people want to get involved, to have control. I do get it, sort of. As Alison pointed out to me, Adam is an inpatient, he is under the care of the hospital. Maybe it's appropriate for some kids, but not where Adam is concerned. What I would like is a relationship where we ask for help and advice as and when we need it. Instead we are in a situation where we are being given advice we never asked for, are choosing to ignore it, and will eventually either have a falling out or at best come to an uneasy truce. I say 'we', it's predominantly 'me'. Stubborn, pig-headed, and determined to be in control. I may not like arguments - but I still want people to see and do things my way!

I had a slight suspicion we might be on a collision course, but things came to a bit of a head on Wednesday evening when Adam's nurse announced she was going to put up his TPN. TPN stands for Total Parental Nutrition. It's 'stuff' pumped directly into the vein as a substitute for food. It's obviously not natural in any way, shape, or form. It certainly does have it's place; if there is no other way to get nutrition into a person, all other options have been exhausted, and they clearly need help I'm sure it can be a life-saver. In my own mind, however, it's clearly a last resort. With regard to Adam it had come up in conversation as a possibility down-the-line if things didn't improve, and we kind of nodded understandingly. However, I was shocked when Alison called to say they were preparing to start it immediately. There was no way he was having it upfront, 'just in case things got worse'. Sure he wasn't eating, sure his weight had dropped from 25 to 23 kilos and sure he was feeling awful; but he wasn't immobile and unresponsive. We weren't desperate; it was too drastic and it was too soon. TPN is made-to-order for a specific individual, and it has a one-day shelf-life. So on Wednesday Adam's TPN went straight in the bin, but it's not something I'm in any way sorry about. Like I said at the start of this post I don't want to offend people for doing their job, and nor do I wish to tell them how to do it. In fact it's more fundamental than that; we just have different views about what's important and that makes it very difficult to be reconciled. We’ll take Adam home having lost a fair amount of weight during transplant but it’s a price we always knew we would be prepared to pay.

Anyway, having refused to allow Adam to be given TPN on Wednesday evening it was clear from the outset on Thursday that he was starting to feel better in himself. He refused to take any pain medication saying he didn't need it. He wanted to eat, he even uttered those immortal words 'I'm hungry'. Of course, having not eaten in over a week it's going to take time. Small steps. There was also an element of apprehension in his swallowing; not so much that it hurt to swallow but that Adam was frightened it was going to hurt. As the day wore on the improvement was more obvious - for the first time in days he had all of his oral medications with very little fuss. The Ursodeoxycholic acid liquid he has from a syringe went in just two attempts instead of the twenty-two it had been taking. At one point he got out of bed, walked over to the cupboard and helped himself to a rice cake. Might not seem like much, but it was more interest than he'd shown since before he had his stem cells returned nine days before. So it was progress.

Friday has continued the upward trend; a small amount of porridge for breakfast, some fish fingers and vegetables for lunch, and a full bowl of broccoli for tea (his choice). A couple of snacks in between. And a serving of a special nutritional supplement called Ultra Meal that was recommended to us by Adam’s nutritional therapist (having once again ignored the dietician’s alternative – oops). He tells us that his throat doesn’t hurt at all now, there’s no discomfort whatsoever when he swallows. I almost dread saying it, but it looks like he’s over the worst.

We are watching Adam’s blood counts each day for signs that his stem cells are starting to grow new bone marrow. Each morning he is having GCSF infusions to stimulate the new bone marrow to produce white blood cells. As of today (Friday morning) his HB was 7.7 and platelets 19; both just about holding steady above the level at which they transfuse (below 7.0 and 10 respectively). In 24 hours his white blood count (WBC) has risen from 0.8 to 2.2, and his Neutrophils (ANC) from 0.04 to 0.5. In order for him to be discharged he must be physically well, but also his WBC must be stable above 5.0, or his ANC stable above 0.5. So we are on the right road. White blood cells to keep on the same trend, with HB and platelets starting to gain some upward momentum. Then we’ll be getting somewhere.

On reflection the past couple of days have left me feeling vindicated in resisting the TPN as I did. I'm not getting carried away though, there's a way to go yet and all manner of complications could still arise that will see us revisit this subject. It’s actually still relatively early days and if it has been as bad as it’s going to get for Adam he will have coped tremendously well compared to a lot of children. But it could still be that TPN will be the right way to go at some point down the line, though I sincerely hope not. I wasn’t saying never ... just not yet.